Chronically Bookish Read-A-Thon!

A year ago I started Chronically Bookish as a virtual book club to feature authors with chronic conditions and disabilities. In the past year it has grown into the most supportive and kind place on the internet (if you ask me) ! To celebrate Chronically Bookish’s first birthday we are holding our very first read-a-thon! Kitty (Chronically Bookish member and read-a-thon extraordinaire) kindly offered to cohost this read-a-thon with me and has written a fantastic blog post that will help you to understand what our read-a-thon is, how to participate, includes suggested reading and ways to fulfill prompts, and so much more! I am so excited to start this read-a-thon with you and to celebrate the incredible community that we have grown into during our first year as a book club!

By: Kitty

Hi everyone! 

I go by Kitty, and I’ve volunteered to write this blog post to help give Cienna the time she needs to rest and recuperate from her recent hospital admission.  I Started following Cienna’s Chronically Persevering instagram account a few years ago, shortly after I started an instagram account specifically to post about my own adventures in art and advocacy as a queer, immigrant, disabled person.  When she started Chronically Bookish, her chronic-illness-centered book club, I knew I had to join!  An inclusive environment AND books?  Yes. Please.  I’m so thrilled to have this opportunity to collaborate with Cienna on an exciting project, which brings us to the reason I’m writing this blog post:

July marks the birthday of the Americans with Disabilities Act AND the very first birthday for Chronically Bookish!  Book Club has turned into so much more than just a place to talk about books.  We’ve made new friends, shared deeply, and learned so much.  What better way to celebrate our first year of Book Club than with a Readathon?  

If you haven’t ever done a Readathon before here’s the basic premise: Choose books that are based on the prompts provided.  When you finish the book you can mark the prompt as complete however you like.  Many people draw out a Readathon layout page in a notebook to keep track of their progress, but you can also print out the graphic provided below, or just check the prompts off on a list. 

A pastel turquoise and gray graphic lists the dates and tags for the readathon.  In the middle, the prompts are listed in a Bingo board style.  We’ll go over those details below.  Graphic created by @nissu_the_superdoodle.

Our Readathon will start July 22nd (this coming Wednesday!) and end August 19th.  Every Readathon is different, but for our Readathon, we’re using a Bingo Board.  Your goals for reading can be whatever makes you feel good; Choose just a few prompts you want to fulfill, aim to fulfill five in a row to make a Bingo, endeavor to fulfill all the prompts, or anything in between! Our goal is for this Readathon to be flexible and as inclusive as possible, so we’ve put our own spin on things as well.  Some prompts are plot/book based, and other prompts are based on different ways to read or consume media.  “Doubling up” on prompts is also totally okay!  If you find one book that fulfills ten of the prompts all on it’s own, congratulations, when you finish that book, you’ve completed TEN prompts!  We also know that every person has different needs, so please consume media however works best for you.  If you prefer traditional books, of course that counts.  Audiobooks, and ebooks also count!  If none of those work well for you, you’re also welcome to count podcasts, videos, movies, shows, or whatever other kind of media toward the prompts!

A pastel pistachio and gray graphic lists the guidelines for the Chronically Bookish Readathon. Graphic created by @nissu_the_superdoodle.

Let’s take a closer look at each of the prompts!  We’ve also listed some books/media that could fulfil those prompts under each description in case you need some suggestions to get you started.

Listen/Watch to a movie/show/video/Ted talk with disability/chronic conditions representation- The goal here is to watch or listen to some kind of media that has a person living with Chronic Illness in the forefront.  

1. Claire Wineland Documentary on Youtube (free)

2. Unrest (by Jenifer Brea) on Netflix and other video streaming platforms to pay per view

3. Gaga: Five Foot Two on Netflix

4. The Fundamentals of Caring on Netflix

5. Brain On Fire on Netflix (also a book)

6. Five Feet Apart on Netflix, Hulu, Sling, Showtime, and other streaming platforms to pay per view. (also a book)

7. The Fault In Our Stars on multiple streaming platforms to pay per view (also a book)

8. The Good Doctor available for free on ABC or with a subscription to Hulu or Youtube TV

9. Atypical on Netflix

10. Crip Camp on Netflix

11. Jessica Kellgren-fozard (any of her videos) on YouTube (free)

Listen to a podcast related to chronic conditions/disability- This one’s pretty straightforward, but if you can’t listen to a podcast, any other media that works for you can count as well!

1. This is not what I ordered

2. Fight like a warrior

3. How is anyone still alive 

4. Fashionably Tardy

Read a fantasy or fiction chronic condition/disability story- This can be any fictional book about a character with chronic illness, or even a fantasy book about a character that alludes to chronic illness.

1. A Curse so Dark and Lonely by Brigid Kemmer

2. A Heart So Fierce and Broken (the newly released sequel to the book above) by Brigid Kemmer

3. The Ables Jeremy Scott

4. The Fault in Our Stars by John Green

5. Five Feet Apart By Rachael Lippincott

6. Dani Brown Series by Talia Hibbert

7. Still Alice by Lisa Genova

8. Daisy Jones & The Six by Taylor Jenkins Reid

9. The Curious Incident of The Dog in the Nighttime by Mark Haddon

10. To Kill A Mocking Bird by Harper Lee

11. The Woman in The Window by A.J. Finn

12. Elantris by Brandon Sanderson

13. We Rule The Night by Claire Eliza Bartlett

*We understand that everyone’s taste and experience is different, but had a few book club members mention that the following books were personally upsetting to them in how they represented disability:

1. Everything Everything by Nicola Yoon (Trigger warning, some readers may find the end of this book upsetting.  Trite themes of extremely unhealthy Mother-daughter dependance)

2. Me Before You by Jojo Moyes (Trigger warning, trite themes of dependency, “inspiration porn” and suicidal plans) 

Read a book about or written by someone with chronic conditions/disabled BIPOC - A book written by or with representation of a person of color who also has disability or chronic illness

1. The Author Keah Brown

2. Dani Brown Series by Talia Hibbert

3. Sick by Porochista Khakpour

4. The Author Roxane Gay

5. Disability Visibility by Alice Wong

6. The Author Samantha Irby

Read a book with a neurodiverse main character or author - There are many different definitions of “neurodiverse”, but for the purposes of this readathon, we’ll say any book written by or about a person (fiction or non-fiction) who has a mental diagnosis that seriously affects the way they interact with others, learn and move through the world.  Autism is a classic example of neurodiverse, but some people also include Depression and Dyslexia within the neurodiverse category.  Since our goal is to be inclusive, we’ll say anything that could be considered under this umbrella counts! 

1. The Curious Incident of The Dog in the Nighttime by Mark Haddon

2. Turtles All The Way Down by John Green

3. Furiously Happy by Jenny Lawson

4. Girl, Interrupted by Susanna Kaysen 

5. Perks of Being A Wallflower by Stephen Chbosky

6. The Bell Jar by Sylvia Plath

7. The Author Samantha Irby

8. Extremely Loud and Incredibly Close by Johnathon Safran Foer

9. The Author Temple Grandin

10. Hyperbole and a Half by Allie Brosh

Historical book about chronic conditions or disability- For the purposes of this Readathon, we’ll let you define what time period is “historical” to you (well, lets say anything after the 1980’s is probably not historical).  This prompt could be fulfilled by a book written about the history of a chronic illness, a historical fiction about a character that has a disability, or anything in between!

1. The Great Pretender by Susannah Cahalan

2. Helen Keller (books about or by)

   1. The Story of My Life by Helen Keller

   2. The Miracle Worker by Helen Keller

   3. Light in My Darkness by Helen Keller

   4. The World I live in by Helen Keller

3. Books about Mozart’s Sister, Maria Anna Mozart

   1. The Secret Wish of Nannerl Mozart by Barbera Kathleen Nickel

   2. The Other Mozart by Sharon Chmielarz

   3. Mozart's Sister by Alison Bauld

   4. Mozart’s Sister by Nancy Moser

4. Ten Days in a Mad House by Nellie Bly

5. Any books about disability during WWII 

6. The Fight To Survive by Caroline Cox

7. Jessica kellgren-fozard has many Youtube videos about historical figures with disabilities

8. All the Light We Cannot See by Anthony Doerr

Read a book with a LGBTQI+ person with a disability/chronic condition as a main character or author 

1. The Author Roxane Gay

2. The Author Samantha Irby 

3. Jessica kellgren-fozard on Youtube

4. Me by Elton John

Read a diagnosis story- Any book that centers around the diagnosis of a chronic condition or disability, fiction or non-fiction.

1. Sick by Porochista Khakpour

2. Wide Awake & Dreaming by Julie Flygare 

3. Brain On Fire by Susannah Cahalan

4. This Star Won’t Go Out by Esther Earl

5. It’s Not What It Looks by Molly Burke (audiobook only)

6. Five Feet Apart by Rachael Lippencott

7. The Fault in Our Stars by John Green

Read in a cozy spot- Find a spot that feels cozy to you and curl up with a book.  You get to define what is “cozy” for you!

1. In bed

2. On the couch

3. In a hammock

4. Outside in the grass

5. In the bathtub

Read while doing something good for your health- Again, you get to define what “good for your health” means to you.  It can be some kind of exercise, or an activity that’s good for your mental health, or even a medical treatment.  (Many of these ideas are much safer to do while listening to an audiobook.  Please prioritize your safety while planning for this prompt!)

1. Read on a stationary bike

2. Treat yourself!

3. Read on a walk/treadmill

4. In the pool

5. With a facemask

6. Before bed

7. Audiobooks and yoga

Take your book on a date- Have something you’d usually like to do with a romantic partner or a close friend?  Take yourself and your book on a date instead or in addition to your other person.  This can be as simple or as complicated as you like!

1. Read on a picnic

2. Read over dinner

3. Read in a hammock

4. Read on a boat

5. Read outside

6. Take your book on a hike

7. Wine night/pop with your book

8. Blind date with a book

Take a nap!- Literally.  Just find somewhere comfortable and take a nap.  Sleep health is important!  Make sure you do this in a way that’s healthy for you.

Invite someone to a Chronically Bookish meeting- Have a friend you think would enjoy book club? Invite them!  Haven’t ever been to a Book Club meeting?  Invite yourself!  Invite yourself and a friend!  We’re open to everyone, including people that don’t have chronic illnesses, but would like to learn and be part of a supportive environment. Our meeting are held every Wednesday at 8:30 PM EST on Google Meet with Closed Captioning available. Join our Facebook group to receive meeting links and to always be up to date on the latest book club happenings!

Discuss a book with a friend- Talk to a friend who read the same book, recommend a book to a friend you think might like it, or just start a conversation with the nurse at your next doctor appointment! As long as it’s one of the books you read for this Readathon, it counts! You could also plan to do a “buddy read” for this prompt.  Talk to a friend or someone else doing the readathon and plan to read the same book at the same time.  You can plan carefully and read the same chapters at the very same time, or you can plan to read the same book over the same month. 

Read a book that benefits your mental health- This could be a book that would bring you great enjoyment to read, a self help book, a book that will help you learn or any book that you think would benefit your mental health in any way.  Ultimately you get to decide what that means to you.

1. Feminists Don’t Wear Pink by Scarlett Curtis

2. Insecure Girls Handbook by Olivia Purvis

3. The Author Brene Brown

4. The Author Pema Chodron

Spoonie selfie- If you’re not familiar with the term Spoonie, check out this Blog post that covers where the term originally came from: The Spoon Theory by Christine Miserandino .  Time to get creative!  If your spoons were actual spoons, what would they look like?  This could be a spoon from your utensil drawer, a two dimensional spoon you drew yourself, or our “Spoonie” mascot printed from Readathon graphics (thank you Holly for your amazing art )! Take a “selfie” of (or with) your spoon doing one of the Readathon prompts. Share them in our Facebook group or on Social Media tagging Chronically Persevering!

Practice self advocacy- It’s important that everyone learns to speak up for your needs, but it’s particularly important when you have a disability or chronic illness.  You get to decide what this means for you, and how you can best advocate for yourself.  

1. Create appt agenda (a list of things you’d like to discuss with or ask your doctor)

2. Make a med list

3. Have open communication with your medical team

4. Educate others about your conditions/your unique experience and perspective

Support a spoonie- There are so many direct and indirect ways to support other Spoonies!  Unlike the other prompts, this prompt is defined by making someone ELSE feel supported.  Make sure whatever you choose is actually something that will help them, and not just something that feels good to you. Some spoonies like it when people ask them about their condition directly, others prefer their friends to find their own reliable sources for learning about their condition.  Some spoonies like phone calls or video chats to talk about how they feel, other spoonies have anxiety around social interaction and would rather receive a care package full of thoughtful items.  No one is perfect and we can’t read each other’s minds.  When in doubt, ask “Is there a way I can make you feel loved, appreciated and supported?” or “Would this specific thing make you feel supported?”.  

1. Reach out to a Spoonie friend

2. Support a business run by a Spoonie

3. Send a Spoonie friend a care package

4. Reach out to someone else doing the Readathon to see if they’d like a new friend to chat with

5. Find reliable sources, like the Mayo Clinic and the Cleveland Clinic, and learn about a friend’s condition.

Revist book club picks- Read or watch one of the things we talked about during book club during our first year!  Here’s a full list, for reference:

1. Wide awake and Dreaming by Julie Flygare (book/audiobook)

2. Sick by Porochista Khakpour (Book/audiobook)

3. On My Own Two Feet by Amy Purdy (Book/audiobook)

4. It’s Not What It Looks by Molly Burke (audiobook only)

5. Claire | The Documentary - Claire Wineland Channel (Youtube)

6. The Great Pretender by Susannah Cahalan (Book/audiobook)

7. Crip Camp - (Netflix)

Hydratitude- This is the act of practicing gratitude while hydrating (regardless of how you hydrate!).  We love the idea of nourishing our minds and our bodies at the same time, and we’d love for you to try this out with us!  Practice Hydratitude once, commit to practicing hydratitude every time you drink for the next month, or anything in between!

Did my best- Feel accomplished for putting clothes on today?  Did you say no to a thing that you really wanted to do, but would have depleted you too much?  Did you try something, but weren’t quite able to reach the conclusion you hoped for?  Did you accomplish a goal you set for yourself?  Did you do something really challenging and fulfilling?  Did you stay in your pajamas and take a rest day?  Congratulations!  You did your best.  These ALL count.  Pretty much just go ahead and mark this one off.

Happy Birthday ADA- The American’s with Disabilities Act was passed 30 years ago this year!  Help us celebrate in any way you see fit.  Take a picture and use the tag #ThanksToTheADA if you can!

1. Bake a “birthday dessert” for the ADA  

2. Host a virtual “ADA Birthday Party”

3. Host a virtual discussion group with ADA focused topics

4. Attend a virtual ADA focused event

5. Watch Netflix’s Crip Camp

Share your story- This can mean sharing your diagnosis story, or any part of your experience living with chronic illness. If you’re participating in the Readathon and you don’t have a chronic illness, check out a Spoonie’s story and elevate it however you’re able.  Share the story with a friend or on social media!

Wear a Mask- In these times of COVID 19 it’s important to wear a mask that covers your mouth and nose if/when you leave your house to protect others, particularly those of us who are vulnerable. Lets help normalize this as much as we can!  Wear a mask and post a selfie with one of our tags.

A pastel turquoise and gray graphic lists the Readathon just discussed.

You can participate by joining our official Facebook Book Club, Chronically Bookish, or you can use the tags #ChronicallyBookishReadathon , #SpoonieReadathon , and #SavorYourSpoons on instagram.  Please feel free to share the bingo board on your Instagram Story, in our group, or wherever you would like as you complete prompts! Al graphics are available for sharing. Tag Chronically Persevering to possibly be featured!

You might have noticed one of the prompts is to Revisit a BookClub pick.  For easy reference, here’s all the books we’ve read and other media we’ve consumed over the past year.

A pastel pistachio and gray graphic lists Book Club Picks: Wide awake and Dreaming by Julie Flygare (Book & Audiobook), Sick by Porochista Khakpour (Book & Audiobook), On My Own Two Feet by Amy Purdy (Book & Audiobook), It’s Not What it Looks Like by Molly Burke (Audiobook), Claire | The Documentary (Claire Wineland Channel on Youtube), The Great Pretender by Susannah Cahalan (Book & Audiobook), Crip Camp - A Netflix Original. Graphic created by @nissu_the_superdoodle.

How to Pick Your Word of the Year

Piper: Make life your runway! We may not be able to control what happens to us in life, but we can control how we react to it.  My girl doesn’t believe in New Years resolutions because statistically they never come to fruition. My girl however, does believe in choosing a word of the year! This word won’t change the way the world turns, but helps to focus and guide the way she views the world. She has been choosing a word to guide and represent her year for 4 years now! 

Your word of the year can remind you of something you want to work towards, a way of living that you want to incorporate into your life, something that your goals are based around, a mindset you need, or something you want to bring into your life. The word is what you want to become, accomplish, think, or feel this year. Instead of a resolution that you either stick with or give up, this is something that you can sprinkle throughout your life in little ways. 

For my girl, all of the words she has chosen have brought incredible change, guidance, peace, and focus into her life. 

Opie sits in the grass next to my girl who is wearing ripped jeans, a navy blue pussy bow blouse, glasses, and wave vogmask. She has one arm around Opie and is holding tiny puppy me with the other arm.

2017: Persevere. My girl learned how to walk while recovering from Guillain Barre syndrome, she battled extreme blood sugar and taught Opie to alert to it, Opie became sick and I came into her life. 

Piper sits on a dock in an army green puffer with a furry hood looking up at Cienna. Cienna wearing a black long fitted puffer, plaid pants, chunky white socks, and black combat boots looks down at Piper.

2018: Teamwork. My girl worked hard to build a team of doctors that would give her a better quality of life and the answers she needed(no matter what they would have been). My girl and I worked hard to bond, communicate, and work as a team. My girl and Mom teamed up to start a business. My girl and her team worked together to decide if the diaphragm pacemaker was right for my girl and then how to go about the surgery. 

Cienna Smiles at the camera wearing a pink tie dye dress and rattan headband. Piper looks at the camera wearing a tie dye collar and brown guide harness. Nanny is wearing a turquoise tie dye blouse and white pants while studying the menu.

2019: Dream. After years of being told she didn’t have long to live, my girl wanted to dream again! She always lived everyday to the fullest and appreciated all the adventures and little moments that the day held. With the diaphragm pacemaker and a second chance, she wanted to dream! My girl dreams of using our experiences and journey to help others, this year we did just that! My girl met with Senator Stabenow, was a special guest at her health care forum, joined fight like a warrior as their communications manager, and started our book club, Chronically Bookish, which has become an incredible space for vulnerability, support, and acceptance. She worked hard to make Claiming Our Seat a reality, to find an organization to partner with to bring it to life, and to launch the project, and so much more. My girl dreamed of exploring the world with me! We went to the Atlantic Ocean in Ocean City, MD together for the first time where my girl shared the waves and her happy place with me. We went on our first trip independently with friends to Michigan’s upper peninsula and learned to rely souly on each other. I joined my family on my mom’s birthday trip to Traverse City and was a great travel buddy. My girl flew with me to Arizona where I kept her safe and allowed her to live life. For the first time with my help she was able to leave the parking lots of Sedona and experience the breathtaking beauty that surrounded us. We now make big dreams and bring them to life and will never stop doing that. 

Cienna wears a cream chunky cardigan, brown leather skirt, brown loafers, brown vintage Coach bag, and tinted glasses while smiling at the camera with her left arm in the air. Piper wears a plaid bandana and brown guide harness.

2020: Believe. This year my girl wants to focus on believing. Believing in us as a team and the hard work we have put in. Believing in herself and the dreams that we are bringing to life. Believing that she can in fact do anything that she puts her mind to. Believing in her work, value, and ideas(boy, does she have a lot). Believing that she can truly be the change that she wants to see in this world. 

Do you want to join us in choosing a word of the year? When choosing a word try not to overthink it. Some years after reflecting there was a word I felt a strong connection with. Other years the word I was drawn to made no sense at the time, but in the end made sense. Below is an example list of words, but there are so many more. Spend some time reflecting on your life, the world around you, and what you would like to embody this year.  Let us know what word of the year you have chosen! 

Believe 

Adapt 

Curiosity

Persevere 

Dream

Courage 

Discover 

Give 

Love 

Build 

Trust 

Gratitude 

Patience 

Change 

Vulnerable 

Hope

Passion

Dedicated 

Start 

Passion

Reflection 

Kindness 

Self care 

Forgiveness 

Thrive

Devotion 

Grow 

Simplify

Forward

Peace

Grace

Compassion 

Belong 

Enough

Present 

Harmony 

Create 

Integrity

Expand

Shine 

Purpose

Do

Lead 

Imagine 

Celebrate 

Journey 

Relax

Teamwork

Consistency 

Observe

Intentional

Mindful

Deliberate 

Bloom

Balance 

Thoughtful

Beauty 

Shine

Faith